A familiar story – this time from New Zealand

From Te Waha Nui, a university journalism website in New Zealand | 3 Aril 2012 | Story by Eva Evguenieva.

Trapped in bed with chronic fatigue – sufferers call for better help

For nine years Wendy Mathews’ chronic fatigue syndrome (CFS) kept her in bed, unable to lift her head off the pillow and with green liquid coming out of her eyes.

All through this ordeal she says she only had at-home district nurse care for two weeks.

This experience has seen her and 5869 others call for the Government to better consider the needs of those with the condition by providing funding, treatment, respite care facilities for them, and education for both health professionals and the public.

They recently presented a petition to Parliament, asking the Government to do more for people like Mathews, who she says are unable to care for themselves and are also often mistrusted and don’t receive the appropriate medical treatment.

Mathews is not alone. Around 20,000 New Zealanders have the condition also known as myalgic ecephalopathy (ME).

“The message we have to get acrosss that when people are this ill, they need nursing, not rehabilitation,” says Mathews.

She says currently ME sufferers are be put into places like rest homes and psychiatric units, which are unsuitable for them.

“A lot of them are sound and light sensitive and they don’t fit in somewhere like a rest home if they are very ill.

“They actually need more hospice-like care or nursing care.

“[Medical staff] need to understand ME and understand that these people can hear very, very minute noises. It is actually painful.”

She recalls her own experience: “For three months I couldn’t see my own children.

“I couldn’t bear them in the room because every little noise just felt like an electric shock down my spine.

“Some days I would just get this massive shaking that would go for hours – four, five, six hours – and when this would stop I couldn’t sleep at night.”

She says medical staff in places like psychiatric units may be kind but don’t know how to deal with ME and patients often come back home sicker than before.

“The problem is that the places they put them into to assess them, have no nursing care facilities. They would try to get them up and shower them and make them do as much as they could themselves.

“And what has been happening recently is that people have been coming home sicker than they go into hospital, and sicker than they go into these places.

“So actually they have gone backwards, not forwards.”

Mathews says doctors don’t know much about the condition, and not much is taught about the condition in medical school.

“Doctors are kind and they want to help, but most of them just don’t know what to do.”

Auckland GP Dr Rosamund Vallings says patients with this illness need a specialised approach in order to get an accurate diagnosis, but after that GPs can manage the condition.

“GP education has to be ongoing, however,” she says.

Vallings says GPs’ knowledge on the subject varies throughout the country.

“Many GPs are very well equipped to deal with the illness, though some have not had the opportunity or the interest to further their education on this topic.”

Mathews says people who are suffering like her, need research, funding and a place they can go to when it gets too much for their families to care for them.

Editorial note: Dr Rosamund Vallings is medical adviser to the Associated New Zealand Myalgic Encephalopathy Society (ANZMES). She is a frequent visitor to ME/CFS research conferences in Britain.